Autism Policy and Politics

I have written a book on the politics of autism policy. Building on this research, this blog offers insights, analysis, and facts about recent events. If you have advice, tips, or comments, please get in touch with me at jpitney@cmc.edu

The federal Money Follows the Person Demonstration Program was first authorized in 2005 and allows certain Medicaid beneficiaries, mainly those with disabilities, to receive long-term care services in their own homes. The program provides a way for elderly and disabled patients to move from institutional care to home or community-based services. The Kentucky Transitions program has been able to help hundreds of Kentuckians make this transition.

At the end of 2015, 43 states and the District of Columbia were participating in the MFP demonstration. As part of an evaluation provided to Congress in a 2017 report, the U.S. Department of Health and Human Services concluded there is strong evidence beneficiaries’ quality of life improves when they transition from institutional to community-based long-term care system. The report also found that on average, monthly expenditures for beneficiaries participating in the demonstration program declined by 23 percent during the first year, saving Medicare and Medicaid $978 million.

Dingell and Guthrie’s legislation to continue and improve the program is supported by a large coalition of aging and disability organizations. ...

“Autism Speaks recognizes the critical importance of Medicaid-funded Home and Community Based Services (HCBS) to individuals with autism and their families,” said Angela Geiger, President and CEO Autism Speaks. “Reauthorizing the Money Follows the Person (MFP) program would benefit individuals across the country who are waiting for HCBS. We strongly support the EMPOWER Care Act and urge Congress to pass this important piece of legislation.”

Sunday, March 18, 2018

For those who remain at larger residential institutions, the horrors of yesteryear have generally ended. In 2012, however, a ten-year-old video surfaced, showing disturbing image of an electric shock device at the Judge Rotenberg Center in Canton Massachusetts. Staffers tied one student to a restraint board and shocked him 31 times over seven hours, ignoring his screamed pleas to stop. The Rotenberg Center is the only one in the nation that admits to using electric shocks on people with developmental disabilities, including autism. Center officials said that they had stopped using restraint boards but insisted that shocks were necessary in extreme cases to prevent officials insist the shock program is a last resort that prevents people with severe disorders from hurting themselves or others. Though a majority of the FDA’s Neurological Devices Panel said that such devises pose “an unreasonable and substantial risk of illness or injury,” the agency had not banned them as of 2014.

ADAPT praises Congressman Chris Smith (R-NJ), a long-time champion on autistic community issues, who is showing leadership yet again by committing to the introduction of a legislation that would ban the use of electric shock devices that are used as a form of “therapy” for disabled people, like the devices used by the Judge Rotenberg Center (JRC). ADAPT and other disability-led organizations have long fought to end the use of these electric shock devices on disabled people, which are made to be stronger than a police taser and have been used to shock disabled people for minor infractions, such as not taking off a coat in a timely manner.

In announcing Congressman Chris Smith determination to put an end to these horrific devices, Congressman Smith said “The use of electrical stimulation devices to “treat” individuals with disabilities as “aversion therapy” is torture-plain and simple. This practice is absurd and degrading, with the UN Special Rapporteur on Torture specifically singling out this practice as a human rights violation. The abuses at the Rotenberg Center need to end, and the FDA-which has for two years both under Presidents Obama and Trump failed to finalize regulations to ban these electric shock devices for aversive therapy-must protect the rights of the vulnerable and ban these devices immediately.”

“Congressman Smith has come through once again for the Disability Community” said ADAPT member Cal Montgomery of Illinois. “We have been fighting for years to end the torture of disabled people who have been subjected to electric shocks. Thanks to Representative Chris Smith we are much closer to ending the use of graduated electronic decelerators to punish disabled children and adults.”

ADAPT members from across the nation have been camped out for eight days outside FDA Commissioner Scott Gottlieb’s home in Washington, D.C. demanding that he release regulations that would do exactly what Congressman Smith is planning to do legislatively – to put an end to this violent treatment by banning these electric shock devices. “I am so glad that this legislation was taken up by a member of Congress who not only introduces legislation but has a track record of getting bills passed,” said Anita Cameron, an organizer with ADAPT. “It is shameful that the FDA wouldn’t release regulations banning these devices. Torturing disabled people is obviously wrong and our country needs to do better. We are thankful to Congressman Smith for leading the way when the FDA would not.”

“We will not rest until this legislation has passed and disabled people are safe from these kinds of abuse” said ADAPT organizer Mike Oxford. “We have worked long and hard for this and we are grateful to Congressman Chris Smith for working with us to make it a reality.”

For decades ADAPT has worked to secure for disabled Americans the same rights and liberties enjoyed by all other Americans. Learn more about ADAPT’s history and activities at www.adapt.org, on social media with the NationalADAPT Facebook page and on the @NationalADAPT Twitter, and under the hashtag #ADAPTandRESIST. You can also follow the fight against the JRC shock device at www.adapt.org/jrc and #StopTheShock.

Saturday, March 17, 2018

Last month, the House of Representatives passed the ADA Education and Reform Act (H.R. 620) to the dismay of many in the disability community. The bill creates a system whereby individuals whose rights are violated under the Americans with Disabilities Act (ADA) must undergo additional and burdensome hurdles to enforce their civil rights. For nearly 28 years, the ADA has provided pathways for people with disabilities to engage and interact with society. H.R. 620 unravels decades of progress, making it harder for people with disabilities to actively participate in their communities. The Autism Society continues to work with national disability organizations to ensure the Senate fails to pass H.R. 620 or similar legislation. State and local affiliates are encouraged to sign on to a CCD letter urging the Senate not to introduce ADA notification legislation.

Senator Tammy Duckworth (D-IL) is preparing a letter to Senators McConnell (R-KY) and Schumer (D-NY) telling them they should not bring forward H.R.620 or any similar bill to the Senate floor. We need help getting additional Senators to sign a letter opposing H.R. 620 or similar measure in the Senate. Please take a minute to call your Senators and ask them to sign-on to the "Duckworth ADA letter protecting the rights of people with disabilities.”

We compared the prevalence of various medical and behavioral co-occurring conditions/symptoms between 4- and 8-year-olds with autism spectrum disorder (ASD) from five sites in the Autism and Developmental Disabilities Monitoring Network during the 2010 survey year, accounting for sociodemographic differences. Over 95% of children had at least one co-occurring condition/symptom. Overall, the prevalence was higher in 8- than 4-year-olds for 67% of co-occurring conditions/symptoms examined. Further, our data suggested that co-occurring conditions/symptoms increased or decreased the age at which children were first evaluated for ASD. Similarly, among the 8-year-olds, the prevalence of most co-occurring conditions/symptoms was higher in children with a previous ASD diagnosis documented in their records. These findings are informative for understanding and screening co-occurring conditions/symptoms in ASD.

From the article:

[F]indings from this study are informative and useful to policymakers, clinicians, and earlyintervention specialists. These data may inform policymakers on the type of screening programs that may provide the best opportunity to capture most co-occurring conditions/symptoms during routine evaluations of children with ASD. Since co-occurring conditions can be found even at a young age, clinicians may use these data to support screening for co-occurring conditions/symptoms and provide specific interventions. As reported by others, the high prevalence and the diversity of co-occurring conditions/symptoms in ASD suggest the need for a comprehensive system of care for these children. Assessment of co-occurring conditions/symptoms at an early age may provide opportunity for early identification of children with ASD, since these conditions/symptoms increase the likelihood to be in contact with different health care providers.

Lawmakers are urging the Trump administration to convene multiple committees tasked with advising the federal government on disability issues that appear to have been put on hiatus.

The three panels — The President’s Committee for People with Intellectual Disabilities; The National Institute on Disability, Independent Living and Rehabilitation Research Advisory Committee; and the Interagency Committee on Disability Research — typically meet quarterly or several times a year, but have been less active as of late, according to six Democratic senators.

In a letter sent this month to Lance Robertson who heads the U.S. Department of Health and Human Services’ Administration for Community Living, the senators expressed concern that the panels “were largely ignored in 2017” leading to less input from people with disabilities and other advocates on federal policy.

“The administration’s failure to convene these committees and councils is a clear stifling of the disability community’s voice and representation in government,” said Sen. Bob Casey, D-Pa., the ranking member of the U.S. Senate Special Committee on Aging and a lead signatory of the letter. “It’s insulting for the administration to make important decisions about key programs without input from the disability community.”

The title of one of Trump's ghostwritten books suggests his attitudes toward disability:

The battle to expand insurance coverage for children with autism has been years in the making at Georgia's Capitol. It won a key victory three years ago – and another in Monday House insurance committee meeting – where chairman Rep. Richard Smith (R-Columbus) has spent years blocking autism legislation.

Smith had worried that adding mandated autism coverage would increase insurance costs. But Smith says he’s studied it further – and is now a believer in the autism bill. Currently, Georgia law requires some insurers to cover autism costs through age 6. This year’s Senate bill expanded it to age 12. Smith expanded it again to age 20.

Smith said his research showed that expanding coverage would cost policyholders less than 50 cents per month. "Fifty cents isn’t going to break anybody," Smith told 11Alive News after the vote.

"Today was a miraculous day," said Judith Ursitti of Autism Speaks, who added Chairman Smith’s conversion was quite unexpected.

So it’s good that a Maloney spokesman on Sunday announced that she’s dropped the lunacy:

“Congresswoman Maloney believes in the efficacy and safety of vaccines. She was at the forefront of efforts to protect funding for vaccines in the Affordable Care Act.”

Yet even after passage of the ACA, she compared — in congressional testimony — those who reject the supposed autism-vaccine link to those Big Tobacco apologists who denied that smoking causes cancer.

To be fair, that was partly because she has a heart, citing “verbal evidence coming from parents where they break down, [and say], ‘I had a normal child, I gave him a vaccination, and then they came down with autism.’ ”

This, when medical experts long ago utterly debunked the connection: The Lancet, the journal that published the original study “proving” a vaccination-autism link, retracted it as utterly flawed back in 2010.

It’s a small win for science that Maloney’s admitting the truth. It’ll be a bigger one if she (and others who did the same) apologizes for promoting a deadly myth.